Inflammatory Arthritis/RA post birth

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Inflammatory Arthritis/RA post birth

Postby Natvanplat » Mon Oct 07, 2013 9:55 pm

Hi All,
I have a beautiful 6 month old son, Chase, who I have been feeding on demand since birth. It has been such and amazing experience and probably my proudest mummy moment!
Throughout the pregnancy I had carpel tunnel symptoms in both hands, predominately my left. My OB said it would go after birth but I noticed the systems were still present when I saw him at my 6 week check up.
At Chases 6 week injections my GP was concerned they I was producing enough milk as my breasts appeared quite soft. He prescribed me medication and suggested I take fenugreek tablets as well. It was still all so new and I had no reason to doubt him. I didn't even think to ask questions or consider that it was late afternoon and bub had already fed numerous times and I didn't know that your body naturally made less milk in the evenings. So I started taking the tablets.
Shortly after I started to feel aching in my right foot and the pains in my hands intensified and spread to my if knuckles in my fingers as well as my wrists and fingers in both hands. I also noticed that when I knelt on my left knee I had intense sharp pain, almost like there was a pin going into my knee cap.
I was expressing almost an extra 300mls per day on top of demand feeding and again thought this was normal. I had a great supply of EBM in the freezer!
I started to have days where my ankles felt like they would crack when I got up out of bed throughout the night to feed bub and I the morning it took me up to an hour to get out of bed without feeling like I was going to collapse. Nights were similar. I was walking on my treadmill with a 20 minute jog for about 30 minutes a day but was finding the pain got worse after exercising. When sat for to long I found my body stiffened and I struggled to start moving again.
My saddest moments was when began to have days I couldn't lift Chase and had to spend the day in bed.
I was recommended to a chiropractor who went on to diagnose fibromyalgia and after 12 weeks of no relief I then tried hydrotherapy. The physio diagnosed carpel tunnel syndrome in both hands and also planta fascia in my right foot. Still no relief so I went back to my GP. Initial bloods came back negative for RA but a friend of mine suggested a rheumatologist may be able to help so I was persistent in asking for a referral.
It took 5 weeks to get an appointment so with no family close by to help I went to stay with my parents. I was needing help with even simple things like changing nappies, buttoning clothes.
Finally, after 6 months of mis diagnosis and treatment, the rheumatologist by doing an MRI has confirmed I have inflammatory rheumatoid arthritis. The Rheumatologist advised that the hormone, prolactin, that helps produce breast milk is an inflammatory hormones is making the pain worse. He feels it may have been attributed to the medication and the excess milk being produced unnecessarily.
I am glad to have a diagnosis but the treatment begins with me having to stop breastfeeding. This devastates me more than knowing I now have an incurable diseases.
I'm finding it very difficult to transition from an on demand breastfeeding rhythm to formula feeding with a set amount I need to give him, as well as fitting that into a baby led routine. How do I formula feed on demand? I've loved feeding him just before he naps and sleeps which is more often for comfort, what do I do now? I have so many questions and have found limited resources to help.
I'm hoping that by sharing my story there may be someone who can help, offer support or may have a similar story. I haven't yet met anyone else who has birth trigger arthritis and would love to talk to others.
Thanks for taking the time to read and I am looking forward to any responses.
Xoxo😰
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Postby Yankee » Mon Oct 07, 2013 11:03 pm

Oh wow you have been through the ringer! What a shame you GP diagnosed low supply so arbitrarily, instead of looking at weight gain or wet nappies.

I'm not 100% formula feeding but we're on a boob repair break with expressed milk and some formula. I still feed on demand. When I notice hungry signs I get the bottles ready to go. You can also prepare the formula and pop it in the fridge, then when bubs is hungry you heat up the bottle. I use a ramekin of hot water to warm mine.
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Postby JMc » Tue Oct 08, 2013 6:14 am

Wow! I'm so sorry to hear you have inflammatory rheumatoid arthritis and that you have to stop feeding. That must be very difficult to come to terms with. Would you consider ringing the aba helpline? The counselors are trained to help with weaning and bottle feeding too and I'm sure could give you some excellent advice about transitioning to the bottle, demand bottle feeding and looking after your self as you stop feeding.

Also, do you think there might be any way you could continue to feed once or twice a day? Would producing less milk be better, but still allow you to enjoy a feed or two with your little one? Obviously I have no experience of this and I would be happy to go with the health professionals' advice, but I wonder if it is something you and they have considered as possible.

Good luck with it all and I hope you and your little one thrive even with the changes you need to make.
DD - November 2009 (Breastfed 19 months)
DS1 - August 2011 (Breastfed 2 years and 8 months)
DS2 - November 2014 (Breastfeeding happily)
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Postby princess-spud » Tue Oct 08, 2013 8:11 pm

Hi,

I was diagnosed with 'self limiting arthritis' after G was born (2011). I understand the frustration oh how hard it is getting diagnosed.

I've also been diagnosed with an under active thyroid which can also have joint pain. Have you had your thyroid tested as well?

Have you started weaning yet? Make sure you do it slowly so you don't cause yourself any more pain.

One of the specialist I saw wanted me to wean G but I might have disagreed with him and so looked around for another specialist who would support me in Breastfeeding (and then being preg and Breastfeeding!). But that was my decision.

Happy to chat more if you want.

X
Princess G is 2.5, proud DDH baby (pavlik harness) and nipple shield fed for 19months.

Lady J is 7 months, self weaned from a shield at 5months and now feeding like a pro.
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Postby AbbeyCat » Tue Oct 08, 2013 10:10 pm

Sounds like you've been through so much!

There's a good article on the ABA website called the Caregiver's Guide to the breastfed baby. The section on pacing feeds helps the bottle feed be more like a breastfeed where bub is essentially in charge of their intake. https://www.breastfeeding.asn.au/bf-inf ... stfed-baby

We've had to mix-feed due to attachment issues, and have essentially demand-bottle-fed at times. We let her hunger indicate volume of expressed breast milk or formula to make up. If in doubt we make up a small bottle and have another bottle of water warming ready for formula to go in, if needed. We aim to finish when she looks finished, not when a set number of millilitres are consumed. If I can't breastfeed her to sleep (when nipples are too sore), my husband or I give her a bottle and that does the trick just as well. Keeping close to bub, maintaining eye contact etc can still make it a close, relaxing, bonding experience.

I hope my rambling above makes some sense. It works for us, but I'd definitely second calling the Helpline to talk about what'll work best for you and your bub.
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Postby Nedsmum » Wed Oct 09, 2013 3:25 am

In my experience (coordinating a childcare centre for the past 3 years), babies who are used to breastfeeding tend to not take such large bottles. There is a healthy thing about 'demand' feeding a baby and not trying to force them to finish a set amount - my staff are trained to do that at work. We don't force the bottle, we just give them a little rest, maybe a nappy change if they need one, sit them upright for a burp, and then try a second time a few minutes later. If they are still 'not interested' then we write down the amount that they had.

What matters is the total intake in 24 hours, and a baby that is being breastfed at home but bottle-fed in childcare will normally make up for it when they are back with the mother.

Occasionally we get children who are 'underdemanding' - maybe a phase, maybe just they are so distractable or burning a lot of energy. Then I do a review of the child's pattern at home and at school, and if we think they might not be getting enough, then the solution is not to make the bottles bigger, but to offer maybe an extra feed time through the day.

Have you started solids yet ? Our 6 month old babies (non breastfed ones) at work would be probably having 5-7 bottles in 24 hours plus a morning offering of solids and an afternoon offering of solids - but the solids offered are not really significant.

For the partially breastfed babies we'd normally offer 3 bottles - maybe an hour after arriving, then 3-4 hours through the day, or sooner if they seem to be hungry.

There is a way to calculate out the amount of milk if you decide to offer it in smaller bottles more frequently - it's pretty straightforward. As a generalisation, the 100% bottle feeding mums are often under pressure to get the baby to take large bottles, less frequently, to cut down the amount of work/hassle, and to 'follow the packaging instructions' - the breastfeeding mums tend to be a bit more 'relaxed' about it all (maybe because they haven't quite had the anxiety producing challenges that most of the bottle-fed mums experienced that caused them to decide to stop breastfeeding in the first place) - and the breastfeeding mums are more accustomed to the idea that you feed a baby on demand....and trust their babies to know when they are hungry...

One thing we do in a childcare setting in a more active way is to separate bottles and sleeping. That's because it's considered unhealthy for the child to have a bottle-feed right before sleeping (for teeth decay reasons). So it's a good idea I think in the longer term if you can find other ways - cuddling, rocking, music, reading a book, taking a pram ride... one of our mums who is very attuned to her child had introduced a dummy part-time and then decided to rapidly wean due to discomfort when she fell pregnant again. She noticed that where her son was actually not particularly 'breast' dependent for sleeping before she weaned, he developed a very strong desire for the dummy after weaning. From the training that I have done, there may be an appropriate role for dummies between 2-9 months for non-breastfed babies, to meet that sucking instinct and more sucking opportunities for a baby that is only bottle-fed. However, I'd be advocating that if you do choose a dummy, you phase it out somewhere between 9-18 months. That's just my experience...
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Postby Yankee » Wed Oct 09, 2013 12:01 pm

Wanted to add that during our bottle feeds, I chose to keep a routine similar to breast feeds. For breast I burp periodically and nappy change between boobs. So for bottles, I first feed the expressed milk bottle with several burp breaks (super important as she gets a lot more air in the bottles and if I don't get a few burps she throws up a lot). Then a nappy change before the formula bottle, again with burp breaks (roughly every 20ml we burp). Bottles stay in the warm water ramekin so they're still at a good temperature after the nappy change. That slows things down quite a bit and I can tell she's full when she doesn't open her mouth for the teat. I don't worry about throwing away extra formula, it's not about finishing the bottle and each feed she eats a bit different amount.

It does take some adjustment as I reckon the hunger/fullness queues are different on bottles. If anything I think it's easier to tell when she's full on the bottle, I'm now having a bit of trouble telling when she's full on the breast!
DD born September 2013
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Postby Gwen's Mum » Wed Oct 09, 2013 5:14 pm

Just wanted to add my hugs and support to the others here.

Also, I'm not sure if you felt you had explored all your options with regards to medications? Rodney Whyte at Monash Medical Centre is a guru of medications' interactions with breastfeeding, and can be contacted via this number: (03) 9594 2361 (Hope that's okay, mods - it's listed on our website after all! ;-) )

I'm not familiar with RA and medication/treatment protocols, but it could be that full weaning may not be the only option.

If it turns out that full weaning is indeed the only option, then others' suggestions about paced bottle feeding, bottle feeding 'on demand' and so forth, are all really relevant.

Hope things start looking up for you soon.
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Postby Gwen's Mum » Wed Oct 09, 2013 5:27 pm

Just wanted to add my hugs and support to the others here.

Also, I'm not sure if you felt you had explored all your options with regards to medications? Rodney Whyte at Monash Medical Centre is a guru of medications' interactions with breastfeeding, and can be contacted via this number: (03) 9594 2361 (Hope that's okay, mods - it's listed on our website after all! ;-) )

I'm not familiar with RA and medication/treatment protocols, but it could be that full weaning may not be the only option.

If it turns out that full weaning is indeed the only option, then others' suggestions about paced bottle feeding, bottle feeding 'on demand' and so forth, are all really relevant.

Hope things start looking up for you soon.
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Welcome Daydreaming's DS! - 18 Sept '13
Welcome Feather's DS! - 27 Oct '13
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Thankyou

Postby Natvanplat » Wed Oct 09, 2013 5:31 pm

I wanted to say thank you to you all for your replies. They have helped so much to put my mind at ease and also given me some great resources.

I'm sure I'll be able to demand feed him with the bottle which gives me comfort to hear.

I placed the post on the recommendation of a beautiful mummy I spoke to on the ABA line. She didn't have a great deal of experience in RA and weaning so thought this would be a great way to get some support! She was right!

I am now going to explore my options and I'll call Rodney to see what he suggests. Would be great if I can keep a morning and night feed or even just the evening one? A second opinion is a great idea.

Thanks again for you words, hugs and support and look forward to any additional comments.

Hugs back xo
Bubba Chase 20/03/2103
My heart and soul
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